My personal adventures and lessons learned while beating the shit out of Stage 3 Melanoma

Wow, what a ridiculous, incredible, unforgettable day April 16, 2018 was. I was able to take in and be in the moment several times while running the marathon, but all the emotion really hit me yesterday. I have honestly never been more proud of myself and more grateful and humbled by all the people who love and support me.

Thank You

First, I have to thank everyone who donated to my marathon fundraiser. You glorious, generous, humans with hearts of gold helped me raise a grand total of $13,508 for IMPACT Melanoma. Together our 36 Team Running for Cover members raised $368,588. THAT IS SO MUCH MONEY FOR SO MUCH GOOD!

I have to give an extra special thank you and shout out to all of brave souls who ventured out in the atrocious weather only to watch me run by for like 10seconds. I mean honestly, temps were in the 30-40s, there was constant rain and often torrential downpours with chilling headwinds gusting up to 40 mph. If you asked me, I’d much rather run in that weather than STAND in it. So now I know that I have some of the best fucking friends and family in the world because only love and true friendship would possess a person to do something crazy like that. The cheers and signs were priceless and it really powered me forward from mile 17 and on. From the depths of my soul, I THANK YOU, I LOVE YOU ALL! Vicky’s posters got destroyed by rain but hers said “Fuck Melanie” and then “P.S. I miss understood the assignment.” Hirsch, Jack, Rachel, & Claudia had a sign that read “Just Keep Schwamming” which is fucking fantastic. Still collecting images and photos of my supporters and signs but here’s what I have so far:

Thank you to everyone who followed me on the app and sent me encouraging texts throughout the day, every single one made me smile.

On behalf of all the Boston Marathon runners out there – I’d like to thank all the other spectators and college students who braved the weather. The crowds were astoundingly thin especially miles 1-12 so the people who were out there, I can assure you we fucking needed you and you guys showed up. Thank you for responding to my waving arms and shouting of nonsensical things with words of encouragement. Around mile 21 I yelled at a particularly glum-looking group of spectators “I had active cancer last year, LETS FUCKING GO” and they went nuts and then I ugly cried for like 1/4 mile – thank you glum spectators, I REALLY needed that release. Thank you to the volunteers who stood in the rain and opened gu packets for me when my fingers were no longer functional and kept me (over)hydrated – I had to stop to pee TWICE on the course and I’ve never once stopped during my 4 months of training. Thank you to the random spectators in the crowd who gave me hand warmers (LIFE SAVIOR) and even helped me shove my hands back in my gloves. Thank you to IMPACT Melanoma and Team RFC for providing me an opportunity to support a cause I care so intensely about while also allowing me to check off a lifelong bucket list item.

Thank you to my parents for raising me to be a strong, independent, goal-driven woman and for trekking around Boston in the rain to see me at mile 17 AND the finish line. Thanks to my brothers for toughening me up and cheering me on from afar. Thank you to Lege’s family who has been so amazing and supportive and also stood in the rain with incredible home-made signs. Not pictured is Casey who made me an AMAZING t-shirt, which will soon be on display.

Finally, a super special thank you to Lege, who had to deal with my weather, wardrobe, ice bath, fundraising, and injury hysteria for 4 straight months and he STILL wants to marry me. His cheers/antics at mile 13 were so alarming that a literal stranger documented our rendezvous without being asked and then promptly sent it to Lege.

As for my time, my original goal was to finish with an average pace of under 10 min/mi. When the weather forecast showed unforgivable rain/wind and I had a couple late tweaky injuries, I decided I wasn’t going to focus on my time but rather enjoy the spirit of the Boston Marathon and try to hug and high-five almost everyone that came out to support me. I am so glad I did that and I wouldn’t change a thing. I ended up with a final time of 4:23:04 at an average pace of 10:02 which included 2 whole bathroom breaks and many other stops for hugs and hand-warmers. I even stopped at most hydration stations after choking at my first 6 attempts to drink from a cup while running or walking fast. Even though my average pace for long training runs were a full minute faster, this just sets me up to PR at my next marathon 😉 I couldn’t have accomplished any of this without all of you, so thank you all.

Other highlights and pearls from 26.2 miles

I accidentally smiled at guy holding a sign that said “smile if you sharted” I started shouting excuses at him but he wasn’t having it.

I seriously considered peeing my pants at mile 22 after holding it since mile 17. I didn’t want to stop because I was afraid of having to wait in line at a porto potty and becoming hypothermic. Also you guys, nobody would have noticed because it was monsooning out there #dontjudgeme. Luckily for my dignity, it turns out I am unable to pee and run at the same time, which convinced me I should just find a porto-potty because standing there peeing in the middle of the street at the Boston Marathon just wasn’t something I could do. I found a vacant porto-potty at mile 23, in case you were wondering, I made it.

I saw a guy running barefoot, but that was at mile 4.

I underdressed for the first time at the marathon in my 4 months of training where I constantly overdressed

my legs started hurting at mile 10. woof

One of the hardest parts for me was having to literally run away from my friends and family after just seeing them. I like, wanted to hang and chat but it turns out there’s no time for that in a marathon.

I ran a total of 420 miles from January to April 16th

I still can only walk down stairs going backwards 2 days s/p marathon

I initially wasn’t going to buy a marathon jacket because the color is just so terrible. After I realized it was socially unacceptable to wear my medal the day after the marathon, I went and got a jacket and haven’t taken it off since.

More blog posts coming soon

Believe it or not I have a blog post in the works that details my marathon adventures and reflections in more depth. I actually still have to graduate NP school this month, so that blog post will be coming in a couple of days. I also have a long overdue Camp Koru post as well. For now, enjoy these photos of my experience. Videos will be posted on facebook (because I can’t post them on here) curteousy of my parents.

You guys! Marathon Monday is TOMORROW! I can’t believe how fast it creeped up on me. Actually that’s a lie, It feels like time has been moving in slow motion for the past 2 weeks. I keep having dreams that I’m running it and waking up exhausted and anxious.

I have so many blog post drafts in the cue and want to write all about my training and my experiences the last 4 months but somehow it’s already 5:30pm on sunday and I will just share with you guys a few tid bits and how to track me.

Track me on Marathon monday

There are 2 ways to do this. Not sure how accurate they are and have been told that they can be pretty delayed in the past. I am in wave 4 and will be starting at 11:15AM.

Live tracking with the B.A.A. Boston Marathon App (free)
A) Search “Boston Marathon” in the app store of your iphone/android device
The app looks like this.
B) Download it (for free). Select boston marathon april 16, 2018. Select “watching”
C) Select live tracking and you can search for me by name (Elana Schwam) or my bib # 28965

Text updates via AT&T Athlete Alerts. This will send you alerts of my progress starting at 10k, then again at 21k, 30k, 35k, 40k, and finish line (42k).
A) text “RUNNER” to the number 234567
B) you should get an automatic reply prompting you to text back my bib number – 28965
C) you should get confirmation that you will get text updates about me. If you didn’t, try again.

Thank you Mother Nature, you sassy lady, you.

Overall, the weather is less than ideal…

I was originally hoping to finish in about 4 hours (9min miles) but with the 20-30 mph headwind, freezing “feels like” temps, and constant rain, I know it’s going to take me much longer. I hope to finish before 4pm, but ya never know. At this point my main focus is to SCHWAM THE SHIT OUT OF THIS MARATHON, because it can’t be worse than cancer and also to just embrace and enjoy the spirit of marathon monday in Boston. This is an incredible dream for me and I don’t care what mother nature throws at me, I’m running this race for me, for you, for all the melanoma warriors and survivors, and all the other cancer warriors and survivors as well as those who are not with us today.

Thank You

Thanks to all you wonderful humans I have surpassed my initial fundraising goal of 10k and have raised almost 13k for Impact Melanoma. You guys probably have a little bit of an idea how much this means to me but then multiply that by 1000 and you’ll get a better idea. I am overwhelmed, emotional, overjoyed, ecstatic about the outpouring of love and support. Every time I’ve gonna on a run the past 2 weeks I have teared up thinking about what this all means to me. This morning at the Impact Melanoma Brunch I won the “Melanoma Warrior” award which I was NOT expecting and brought both Lege and I to tears. On top of that I received a standing ovation when I went up to accept the award and nearly lost all my marbles and was sweating profusely while also holding in my pee for the last 30 minutes. When I got back to my seat I realized my fly had been down for the entire time.

I dedicate this marathon to…

Originally I was going to write names on my body, but again the pouring rain will have me covered up and or wash it off. Then I thought about posting it here, but I want to protect people’s privacy so know that I will dedicate each mile to specific people and I’m running the marathon for everyone who has experienced a cancer diagnosis, including the family of those who have been touched by cancer.

I love you all. Now I’m gonna go destroy some pasta and then PTFO.

Here are some pictures of my training and other marathon related events the last 4 months

A lot of wonderful things have been happening since I last updated my blog at the beginning of Camp Koru (camp for young-adult cancer survivors) in early November. I was originally going to discuss my time at Camp Koru in this blog post but it turns out I have so much to say that I want it to have its own dedicated post, so that will be released at a later date. Why not spread out the good vibes, amiright?

2018 Boston Marathon?!

About 6 weeks ago I applied to run the Boston Marathon for IMPACT Melanoma (more about them later). It was very late in the application process and I was rushing to get it in as they accept runners on a rolling admission and only have a 25ish spots for “hundreds of applicants.” Much to my excitement I had a phone call interview a few days later, which went well and was told I would hear back by the end of the week. Long story short, I didn’t hear back until January 2nd – about a month later than I was initially expecting, (due to delays in receiving numbers from the BAA). While I was “running” during this month of purgatory, I wasn’t training by any means, and had pretty much given up hope that I would be accepted. It literally felt like I was waiting for some [insert dating app] bro to text me back, after we had an awesome first date and totally seemed to be on the same page, and then boom – he ghosted for a month and I went through the 5 stages of grief. But alas! Turns out he was in a coma that whole time but now he’s awake and WE’RE IN LOVE.

Sorry, got a little carried away with that analogy. Anyway, I am SO EXCITED to announce that I am running the 2018 Boston Marathon (also my first marathon ever) with Team Running for Coverto raise money in support of IMPACT Melanoma – a national non-profit organization dedicated to reducing the incidence of melanoma through education, prevention and support!

I cannot tell you how emotional this is for me (but actually I can and I’m about to). It has been a dream of mine to run the Boston Marathon ever since I was a little girl. Every Marathon Monday in the past I would tear up and yell my self hoarse for strangers. Now I get to not only run the Boston Marathon myself (a top 5 personal bucket list item alone), but I also get to raise money for a cause that is obviously near and dear to my heart. I’m not gonna lie, I’ve already gotten a little emotional on my training runs thus far.

Please help me reach my goal of $10,000 by donating to my personal fundraising page (click on the image)!

Fundraising Update: I am overwhelmed with the generosity of everyone who has donated thus far. In just 3 days, I am already 68% of the way toward my goal. I initially thought the fundraising was going to be the hard part, but it turns out I am supported by some of the most benevolent friends and family (and even strangers!) in the world. I cannot thank you enough, your support means the world to me. Keep up the good work, everybody!

Now for the real hard part – the running. While I’ve been running to train for frisbee, stay and shape, and for my general mental health since my teens – I have only run 2 official “races”. A jingle bell 5k in Somerville and a the 5.2 mile Brew Run in Brewster, MA – both causal races that encourage drinking beer at the end. I actually once trained for a half marathon (Hyannis Half) during the 2014-2015 winter from hell where Boston had weekly snow storms dumping record-breaking amounts of snow on my poor city. The race got canceled during a 10 mile training run I was on a week before the race. I was pissed. If you are in the northeast, then you are probably thinking what I am thinking – which is that I am cursed. So far this winter has sported WEEKS of single digit/subzero temps and a bunch of snow and ice. Yes I have still been running outside, and yes mom I was wearing like 4 jackets, and yes Dad, that was way too many layers, and no I probably won’t join a gym because they are terribly expensive and make it nearly impossible to cancel your membership (not to mention I consider running long distance on a treadmill cruel and unusual punishment). It hasn’t been easy but I have never been more motivated to run in my life… and nothing compares to a melanoma diagnosis so make like land Dory and just keep running… just keep running…

I also just remembered I completed triathlon when I was a sophomore at Earlham College. That has to count for something right?

Medical Service Trip – La Romana, Dominican Republic

Remember when I posted on facebook several months ago asking you guys for donations for a medical service trip I was going on? Welp – it’s time! I am traveling to La Romana in the Dominican Republic as we speak (on dah plane) with a group of NP students and professors from MGH IHP to provide medical services and health care to impoverished sugar cane workers and their families. We raised money to purchase much-needed medical supplies and medications, since they literally have no access to these very necessary items. We were supposed to have been there for a few days now but our original flight got canceled but we were able to re-book and here we are. I will have very limited access to the internet while I’m there, but a super awesome lady in our group by the name of Courtney Owens has volunteered to bring her laptop and be the head blogger for our trip! So if you are interested in following along, hearing more about our scholarly projects, and reading more about the travel fiasco on friday – feel free hit up our blog – Nurses in La Romana.

For now, just wish me luck at getting through customs with 1,000 condoms and a bunch of Styrofoam bananas in my checked bag (I am teaching about HIV prevention).

The “models”

Because this post lacked color, here are a selection of photos from the last few months – including vacation to San Diego to visit Shira & Tom and surf/visit with Lege’s cousins, a quick pit-stop in vegas, Christmas with the Freedman/Trittipo Clan, and some random stuff mixed in.

I can’t believe another 4 months has flown by since my last set of scans. It’s amazing how time flies when you’re not enduring state of the art immunotherapy treatment that makes your immune system try to kill you… but in a good way, (most of the time). Welp, lots has happened during the best season of the year (frisbee season) but it just ended a couple of weeks ago and I’m just starting to crawl out of the black death hole of depression that post-nationals and the daiquiri deck leave you in to die. It turns out that it’s harder to shake that depression when you lose in the finals and you threw a turnover during a pivotal moment of the game… ANYWAY, I digress. I’ll get to the stuff you guys actually come here to read:

Scan results

Before I get into all of the nitty gritty, I’ll just tell you all that my most recent set of scans were CLEAR! This means I am still at NED (no evidence of disease) status. This is great news and nothing changes since my last scans, except for that my oncologist had a little mix-up and told me to come back in 3 months instead of 4. It still bothers me that there is no guarantee that the cancer won’t come back, and that the chances of it returning lie somewhere between 40-60% but every day it gets easier to deal with this reality. Also, everyday there seem to be new breakthrough’s in research for Melanoma. About a week before my scans I received a letter from my oncologist that would have changed my treatment had it been this time last year (if you recall, we did change my treatment this time last year but it would have been different even still). Since new study results have been published, they no longer treat patients at my stage with Ipilimumab or interferon. There is a new BRAF targeted treatment (BRAF is a special melanoma gene mutation that my particular tumor had) as well as another novel immunotherapy agent called nivolumab, both of which are safer and more effective than either of the treatments I received last year. My oncologist and I laughed about this together, which shows you how far I’ve come. At this point, I am still NED so it wouldn’t make sense to start another treatment now. But I do know that if Melanie ever decides to show her ugly face again, there are a number of punches I can throw at her.

I don’t know if it was because I was stressed about school or excited about Camp Koru, but unlike my last scans, these were pretty painless, emotionally speaking. I didn’t shed a single tear, and it’s not like I was trying to fight it anyway. I didn’t feel any more or less confident than any other time but a weird sort of calm just came over me while I was there. The only issue was the CT technician told me I had just 40 minutes to drink the 2 bottles (900mL total) of vanilla barium sulfate (which is not a lot of time when you account for wanting to gag after every sip). At my attempts to finish quickly I plugged my nose and tried to chug a whole bunch. Big mistake. I have never been so close to projectile vomiting, and not… However, knowing that I was still going to have to drink it again if I tossed it up, I don’t know how I did it, but I kept it down. Crisis averted. Big props to Lege for talking me off the cliff a few times. And in general, Lege has been the most amazing support partner. Without asking, he knows what to say, what to do, how to act around me, especially when I get all canceremo.

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Drinking vanilla Barry

CT Scanner!

Camp Koru

So when I first was diagnosed and I was looking for support, I did what any millennial would do and joined a facebook group for people with melanoma. Huge mistake. It turns out in this group 90% of people posting are 60+ year olds posting pictures of their moles and other naive folks commenting on said pictures saying “get it cut out now!!!” and other unhelpful things, etc. The other 9% are people posting about their horrible experiences but in the end saying they know Jesus will find a way to save them. To each, their own, but obviously I was not going to find anything useful from this group…. UNTIL one random day some angel from heaven (the 1%) posted a link to free resources for cancer patients. I randomly clicked and found a few camps or retreats. None of them seemed good for me AND THEN the very last one was titled “athletes for cancer.” I was like YUP! They have since rebranded and now call themselves camp koru or project koru (good decision guys, because it sounded like athletes were giving cancer the thumbs up). So this camp is targeted to young adult cancer fighters/survivors ages 18-39 who want to find healing and connection through sports and outdoors adventures. Particularly learning how to surf in Hawaii.

This. Could. Not. Be. More. Perfect. For. Me.

As you know, the one thing that has been missing for me is finding other like-minded individuals who have experienced similar traumatic cancer events and ideally learning how to heal together via human connection and shared experience. It’s not common for 20-30-40 something’s to have to face our mortality this early in life so those that do, I would think may have something to talk about that “normal people” won’t really have insight into. Also, initially when I was having difficulty getting my strength back after treatment, I was told it could take “years.” I had never imagined a life for myself with out sports and ultimate and the thought of not being able to play at my previous high level with all my TEAMmates, was depressing and terrifying. It turns out I picked up lost ground quickly and this season ended up being one of my best seasons individually speaking. But I know I am going to learn and grow so much from this experience.

Any who, I am SO EXCITED. Also I am currently on the last leg of my flight from LAX to OGG (Maui).*** I gave myself a day to recharge and get over jet lag at a hostel on a beach. Then tomorrow I’ll be meeting 14 other cancer warriors around my age for a week of surfing, healing, paddle boarding, hiking, yoga, and all you can eat organic goodness. Feel free to check out the website for camp koru, and would encourage you to donate so people like me can attend these camps for free (except for flights).

****UPDATE: It’s been a couple nights since I’ve had Internet access buuuut I just had my first night with everyone at Camp Koru and it’s amazing. I’ve already had so many wonderful conversations and feel so connected with literal strangers. I’m the only melanoma kid in a school of breast cancer people (plus a few other cancers) but it’s already amazing. We all need this so badly. Nobody prepares you for life after cancer and it’s just so great to talk to other people who have been going through the exact same issues.

Life Updates

Ultimate/Brute Squad

This season was a ton of fun. Brute Squad had lots of success. For me, it was my first year being a permanent O-liner, which was lots of fun. I got to throw the disc a lot more than when I was on D-line. Nationals were in the storied Sarasota, FL this year. We made it all the way to the finals, but then lost to Fury on double game point. Huge bummer. But now that the depression has lifted, I am more motivated than ever to crush in 2018. Also, we earned a bid to worlds! So we can potentially win the world next July! Unfortunately instead of worlds being hosted in cool places like Australia or Perth, like it has in the past… Worlds in 2018 will be hosted … in…. Cincinnati, OH. Another huge bummer…. But at least flights will be cheap. No offense to any Ohioans out there.

Enjoy some pics from the season below. Apologies for the atrocious formatting, the WiFi is so bad I could only add pics from my phone so my editing tools are limited. Instead of arriving captions for all them I’m just gonna have you ask me for the back story if you’re really curious

Grad School/MGH IHP

I am currently in my 2nd to last semester of grad school. I have two amazing clinical placements and I’m learning SO much. One of them is at Neurosurgery @ Lahey Medical center in Burlington, MA. The other is with Elder Service Plan, which is a PACE program servicing camberville – Medford area. Can’t believe I’ll be graduating in May but I also cannot wait to be done with school and be out there taking care of people.

Oh, in January I’ll be going on a medical service trip with a few colleagues and professors at the IHP. We’ll being working setting up small medical clinics at Bateyes in the Dominican Republic. Bateyes are where many Haitian sugar cane workers and their families live and they have no access to healthcare otherwise. That should also be a really eye opening and hopefully rewarding experience.

As for camp Koru – I’ll assuredly be posting daily on facebook and instagram, so feel free to follow me along there.

I realize that the anxiety some of these posts may cause, so without further delay I’ll get to the…

Good News:

I had my 1 year scans (CT of abdomen, chest, pelvis and Brain MRI) and blood work about 4 weeks ago and received the results later that week. That whole week of tests and appointments was terrible but scan-day was the most traumatizing. I cried like a child who’s trip to Disneyworld got canceled at the last minute. Fortunately, we got excellent news that at 1 year, my scans showed No Evidence of Disease (NED)! While the statistics for 5 year survival for someone in my situation are pretty grim [65% for stage 3b treated with ipi], we all (including my oncologists) feel that my chances of survival are better than this for a multitude of reasons. Also being NED at 1 year is an important prognostic marker. All of this is good news and puts me in a good position moving forward. I will continue to have scans and blood work every 4 months for the following year to make sure there is no cancer recurrence. I was hoping that this news would bring about feelings like joy and relief, which it did. But unfortunately these positive feelings were fleeting and quickly replaced by a familiar wave of anxiety, doubt, fear, and uncertainty.

I am learning that survivorship is a very tumultuous state of being. I can understand how my reaction may be confusing for someone who hasn’t faced a cancer diagnosis personally. I myself didn’t understand my own feelings at first; shouldn’t I be celebrating that I am currently “cancer free”? Shouldn’t I be less worried than I was 1 year ago? Shouldn’t I just be grateful to be alive? Why can’t I just trust my scan results? I desperately want to feel these things, and I am working hard to get there but I realized I have a lot of processing and mind body healing to do first. [side note: I am doing much better since I started writing this post 3 weeks ago]

Fear, Doubt, and Anxiety

Let me explain the why I have these feelings: I have been traumatized. This whole journey started with a misdiagnosis 7 years ago. They took a biopsy, they said it was benign, they were wrong. Just in case they removed the mole with wide CLEAR margins. Even if my early stage melanoma had been diagnosed correctly, the fact that it metastasized to my lymph nodes puts me among the 3-5% of people for whom that happens. Unlucky, for sure. Fast forward to Spring of 2016, I was told by 3 DOCTORS that the nodule under my arm was benign. After an ultrasound, one of them even said verbatim “YOU DO NOT HAVE CANCER.” They told me I didn’t need to remove it and that doing so would only be for cosmetic reasons. Well, there was a little voice and a terrible feeling in the pit of my stomach that said, this is not normal, get this thing out of you now. So I had them cut it out of me and it turned out to be fucking stage 3B melanoma. Maybe now you can see why it’s difficult for me to feel at ease when I’m told I have “NED”. Initially my skepticism is what actually ended up saving my own life, so this is why I am having a hard time turning it off, even with medical technology and basic logic screaming at my face.

Gross Specimen: my tumor

On top of this, Melanoma is notorious for its ability to recur and metastasize, which at my stage is considered high-risk. This risk is the whole reason I had adjuvant immunotherapy. Technically I was NED after my surgery last July, but because the risk of recurrence is so high, they recommend systemic therapy to lower that risk. In a small percentage of patients, Melanoma has the ability to lie dormant and then can recur even after 15+ years of being NED. My oncologist could not give me any statistics for my chances of recurrence, just the basic 5 year survival (65%). This is part of the reason I will still be having scans and blood work every 4 months this year. I could be cured or the cancer could come back in 4 months or 6 years. We will never really know, so in that sense it feels like there is never really good news, just the absence of bad news.

As you can see, there is a great deal of uncertainty moving forward. When you are undergoing active treatment for cancer you have a plethora of resources ( daily/weekly appointments with your healthcare team, blood draws, massage therapy on sight, friends and family support, meals, etc). While time consuming, it was comforting to know that I was being watched so closely to prevent bad things from happening. In my newfound 4 month intervals of freedom it is difficult to quell my nerves when a new symptom pops up. I am supposed to be vigilant to watch my body for any changes or signs of recurrence while also avoiding turning into a complete hypochondriac. Before my last set of scans I was feeling particularly short of breath at brute practice one day and the thought popped in my head for a split second that it could be because maybe there’s a new tumor in my lung. This thought of course spurred a small anxiety attack, which made said shortness of breath worse. I was able to calm myself down pretty quickly and later dismiss the tumor hypothesis, but just the fact that these types of fears and symptoms aren’t completely irrational is a bit unsettling.

In addition, when I was in treatment I felt like I was doing something very proactive with my time – I was actively fighting cancer and I felt so much strength and support from those around me. Nobody prepares you for after-treatment or “surveillance.” I am in the same state as I was last year—NED—but now I just have to sit back and hope that the cancer hasn’t returned or doesn’t recur. It’s hard for me to sit here with the weight of uncertainty and not be able to do anything about it. Those of you who know me as an athlete, know that I’m aggressive, that I play with passion and heart, that I’ve spent a majority of my life sacrificing my body to catch a flying piece of plastic or prevent a ball from going in a goal. So when my life is seemingly on the line, I want to do everything I can to save it. Sitting on the bench is hard both in sports and in life.

Sunshine and happy shit

BUT I AM GETTING BETTER! I continue to see a therapist and psychiatrist who have helped me understand that what I am feeling is not abnormal for cancer patients and survivors. It is actually well documented that cancer patients often suffer from some form of depression or anxiety after active treatment ends. Even though I am in NP school, I didn’t realize I was traumatized or experiencing PTSD until they spelled it out for me. Normalizing these feelings helps me with acceptance and allows me to move forward. Denying these feelings or my experiences backfires in a big way (which unfortunately is seen first hand by those that love me the most). I am also doing a lot better at dealing with random “symptoms” that pop up. By symptoms I mean stomach aches, headaches, and moments of being breathless. I remind myself that I am a god damn health professional and I can usually rule out cancer being the cause right away.

As you can see, I feel like my fight with melanoma is far from over. I do not consider myself a cancer survivor yet, and I’m not sure I will for a number of years, but I hope to get there both physically and emotionally. Taking the time to process all of these emotions and feel these feelings has been hard but ultimately, really good for me. In fact, every day I feel a little bit better, a little bit more hopeful. Sure I have my bad days now and then, but ultimately I feel like I am growing stronger emotionally and physically every damn day. Getting back into an everyday routine has been extremely helpful. My 3 week intensive clinical rotation and the VA was amazing and the Brute Squad season is well underway and has been therapeutic for me in every way.

What can you say to me (or anyone fighting/surviving cancer)?

People have asked me how they can support me or even just what they should say to me. This is a great question. At first, I didn’t know. What I have realized is I am averse to people who say “congrats on being cured/in remission”, “I know you will be fine” or something along those lines. Firstly it’s false for all the reasons I explained above. Secondly it implies that you can see the future, which you can’t and last time I was told “you’re fine” it was cancer. Thirdly, it discounts what I am and have been going through. If you have said something like this to me, please don’t feel bad because I understand you were trying to support me and had good intentions. Also, like I said, I didn’t even know what would have been helpful initially. Now that you and I know all of this, here is something helpful that you could say to me (or to another cancer person who feels the same way): “I am so happy to hear about your good news so far, and I am still with you for whatever the future may bring moving forward.”

Also, when someone says “congratulations” to me without context, I get very confused. I don’t know if you are congratulating me on my engagement, my ability to still be alive, or the fact that I took a shower this morning. Maybe lets just avoid that word all together, for now. A good rule of thumb for me is to be clear or direct with any question you are asking: like “how is the cancer thing?” is actually way better than “how are you doing?”

disclaimer: I may be unique in this respect, so the above paragraph does not necessarily apply to all other cancer patients.

I’d love to write a blog post entirely dedicated to talking to cancer patients/survivors if I can find the time in the future.

Thank you

It has been so wonderful to reflect back on all the support I have received over the past year from family, friends old and new, my TEAMmates, and even strangers. I received countless postcards, letters, messages, emails, texts, gift cards, and home cooked meals delivered to my door. I received a lot more than I was able to respond or send back and I want to thank you all for your understanding. I don’t think I will ever be able to respond to every email or message, but I loved reading every single one of them and they all gave me strength. Additionally I always joke that there are definite benefits of a late stage cancer diagnosis. People you’ve lost touch with come out of the woodwork and you get a second chance to rekindle fading friendships. I cherish this opportunity. This diagnosis has also strengthened many of my existing relationships. Personally, I have learned to be less hard on myself and to try to fucking relax more and also enjoy relaxing. I think I truly understand and feel gratitude for life and relationships (and Obamacare) in a way I wouldn’t have otherwise.

My parents have been amazing. They probably have the toughest job. They are the only ones (aside from Lege) who have experienced my rollercoaster of emotional reactions as I hear both good and bad news. It hurts me to see the effect on them as I deal with all of these feelings but they continue to love me unconditionally even give me some space when I’m unable to ask for it. My mom is probably texting me right now to say “Don’t worry about US, we’re here for YOU.” They also took on the very difficult job of sending out my one year results to our family and close family friends while I was unable to even open my editing screen without crying a fucking river.

Lege, you already know how I feel about you and luckily our relationship/communication is so on point that I don’t have to tell you in a blog post. Also, you are sitting right next me me. You guys we’re getting married.

Life Updates:

I’ll keep this short –

Ultimate: 5th season with my ultimate frisbee team Brute Squad is underway! We won our first tournament in Colorado. It was really nice to play without an ace-bandage wrapped around my chest like I had last year. This weekend we are headed to MN for the U.S. Open, an international tournament featuring the top 5 US teams and teams from Canada, Great Britain, Japan, and Colombia (in the women’s division anyway). Some of our games may be streamed on ESPN3, you can follow Brute Squad on twitter if you are interested.

Also at practice this past weekend I took a very desperate, high speed attempt to score to the face.

School: I did a 3 week intensive clinical rotation at the VA in White River Junction, VT in June and it was AMAZING. It was my favorite rotation so far in primary care and I had a great preceptor and really great clinical experience in general. I also got to live with one of my best friends and former TEAMmates, Bitterman, who is currently finishing an NP residency there. I’m still chugging along this summer semester and then I have 2 more semesters until I graduate in May 2018. Can’t wait.

Thank you to everyone for reading. As always, don’t hesitate to reach out or ask me any specific questions. I love specific questions.

Much love & fuck cancer.

***Important update 8/1/17 @ 1:30pm (EST)

Karen, my future mother-in-law created and emailed me this gem after reading this blog post. It’s too good not share and its SPOT ON.

At the end of my last post (if you made it that far) I mentioned another young ultimate frisbee player battling cancer, named Ryan. In the two days that passed since I publish that post, Ryan deteriorated rapidly. I wrote the following post this evening on facebook and was encouraged to share it in my blog.

I didn’t know Ryan personally but I came across his blog one day while I was browsing facebook on my way home from my own infusion at MGH in early November. I remember I spent the rest of the day reading (laugh/crying rather) through his blog instead of doing homework. We shared similar beginnings to our story: Ryan was initially healthy, athletic, young…an ultimate frisbee player from New York. We were both thrown a curveball in the form of a late stage cancer diagnosis while we were in the prime of our lives. Unfortunately, Ryan was at Stage IV colorectal cancer when he was diagnosed. Since my diagnosis (stage IIIb melanoma) I have been yearning to connect to someone my age going through a similar experience. I wanted to email him and be like, “Hey I play ultimate and have cancer too! Lets be friends!” I didn’t send the email. I thought about all the people who had emailed me that I had not yet responded to. It was something I struggled with and didn’t want to be that for Ryan. I also knew his time was probably more limited than mine. In retrospect, I should have emailed him anyway because ultimately I’ve felt it’s great to hear from people even if I don’t get a chance to respond.

After my infusions ended/side effects dissipated I was trying desperately to get back to normal life. I forgot about Ryan’s blog until recently when it popped up on facebook again. I read the updates saying Ryan essentially was out of treatment options. This broke my heart. Part of me was confused about how emotional I was getting over someone I had never met. Ryan probably never knew I existed, but just reading his blog I felt we had bonded in our unfortunate shared experience of being a young person strapped into the monster cancer roller coaster against our will. Ryan was experiencing my worst nightmare.

I decided to donate the money I had left over from the fundraiser my TEAMmates held for me. Ryan and Clover (his new wife) clearly needed it more than me and donating it to them felt so right and eased that sense of helplessness that was overwhelming me. I made the donation on Wednesday. Yesterday Ryan was moved to hospice, and this morning I woke up to a text from a mutual friend saying that Ryan had passed away. My heart aches for Ryan’s friends and family. It’s just unfair, horrible, and devastating.

Even worse is that [To quote a blog post by one of Ryan’s friends (“Feetch”)]: “when you’re diagnosed with cancer, nobody will give you life insurance. This often means that the people you leave behind are stuck with bills while in mourning. Any of the money raised here that can’t be used for Ryan’s bucket list, will be saved for future use towards a memorial, FUNeral, burial, and all the stuff that sucks about cancer. It sucks enough to watch a loved one suffer, but to then have the added stress of trying to pay for those services while mourning, would be terrible.”

Lege’s Thoughts

Lege is way better than I am at articulating things we both are feeling. I asked him to add his thoughts here:

Schwam shared Ryan’s story with me since the beginning, and in the last few days she kept me up to date. At the same time, the condition of another young woman she was following also deteriorated. We arm ourselves, even in Schwam’s current “healthy” state, with reassuring mental defenses like “She’s young” and “She’s strong.” These recent developments take a big swipe at those comforts. We are feeling many things: how lucky Schwam is, how unlucky Schwam is, how much pain these other families must be in, how uncertain the future is. I’m most proud of Schwam for letting these feelings out, and for letting me let them out. You HAVE to let them out, AND you don’t necessarily get to choose when they come out. But whatever you can do to open up to the grief and fear when they come through, do it. There’s been a lot of crying over here, but I’m happy there are two of us.

This is Elana/Schwam speaking here. I just wanted to introduce my Aunt Val who wrote the blog post below in November 2016. I have been meaning to share this for a while but a lot was going on at the time and now seemed like the most appropriate time to share as last week was my last NP dermatology clinical of the semester AND it was Aunt Val’s Birthday! At the end of this post I will discuss my dermatology clinical rotation as well as actual guidelines regarding skin cancer screening. But for now, I’ll let Val take it away…

Guest Blogger Aunt Val – A Trip to the Dermatologist

Hi all, it’s Valerie Rind here, aka “Aunt Val.”

Elana’s dad (Eric Schwam) is my brother, so Elana is my niece. I shed the Schwam name when I got married because I was annoyed that no one could ever spell or pronounce it.

As you know, Elana does more than just make the best of a bad situation (like having an inconvenient last name, or, oh, y’know, having cancer). She continues to amaze everyone by turning things completely around and showing who’s the Schwamboss.

Almost makes me wish I kept the name. Nah, not at all.

I’m the least medical person in the family where my brother = doctor, my sister = nurse, and me = lawyer and author.

I still don’t know how to pronounce Keytruda or Ippitymumbai and it’s a damn good thing I don’t have to inject myself.

So my comments are from a layperson’s perspective (i.e., medical idiot) but I hope they’ll be helpful.

Aunt Val Visits the Dermatologist

Two or three years ago I went to a local dermatologist about a small mole I had (on my left breast, if you really must know). He said it looked OK.

This year I noticed the mole was getting more pronounced. I told myself to get it checked, but you know how it is. One more thing you keep putting off. Particularly if it might involve needles.

Prompted by Elana’s diagnosis, I said to myself, “Self, go get that thing examined. Now.”

Aunt Val Visits a New Dermatologist

Another dermatologist examined my mole and said it looked perfectly normal. He excised it while I tried to distract myself by telling him all about my awesome niece Elana.

My ex-mole was sent off for biopsy.

The dermatologist asked if I wanted a full body exam. I thought he meant he’d pass some electronic gizmo over the surface of my skin to see what showed up. (You medical experts are NOT allowed to laugh at me.)

He explained it was a visual exam. I dropped my gown and he looked a bit startled. You’d think he’d already seen many naked, mid-life women during his medical career. After all, just moments ago he was up close and quite personal with my left breast.

Nothing on my body looked abnormal, he reported.

It’s What We Don’t Know

The dermatologist pointed at some faint white spots on my arms. “I know exactly how you got those,” he said. “When you were a teenager, you slathered on baby oil, lay in the sun, and burnt your skin. Repeatedly.”

“Well, of course, that’s what everyone did,” I said. “Now I use SPF 6249 or whatever the highest one is that blocks everything.”

We didn’t know 40 years ago that frying our skin was harmful. The dermatologist theorized that in 40 years we’ll discover that using cellphones has long-term consequences. Whatevs.

Lessons Learned the Hard Way

Elana’s experience has taught me many things so far:

The power of the spirit.

The advantages of healthy living.

The incredible importance of having the emotional support of your family, partner, friends, and colleagues.

The need to get accurate, up-to-date medical information and informed opinions.

That medicine sometimes asks a lot more questions than it answers.

That you need to make the decision that’s right for you.

That a keen sense of humor is essential.

And if you have any doubts about a medical matter, don’t delay. Get it checked out.

Again: If you have any doubts, get it checked out.

Oh, and in case you wondered: The biopsy of my mole showed it was benign.

#fuckcancer #awesomeniece

Aunt Val with my brother Aaron and I probably in the late 80’s?

Aunt Val!

Thanks Aunt Val! This is such an important message to send out to the world. If you interested in more words of wisdom by my Aunt Val, check out her website http://ValerieRind.com. She also wrote a book,Gold Diggers and Deadbeat Dads, whichis available at Amazon, on the iBookstore, and at Barnes & Noble for NOOK.

Skin Cancer Screening – Soap Box Alert!

For part of my clinical rotation this semester I had to research a screening guideline so naturally I picked the topic of skin cancer. I was surprised and pretty upset about finding out the following U.S. Preventative Services Task Force (USPSTF) statement on skin cancer:

“There is insufficient evidence on the benefits or harms of routine visual skin examinations by a clinician to make a recommendation for or against this type of skin cancer screening for adults (18+) who are asymptomatic” (USPSTF, July 2016).

Seriously? Go eff yourself.

This recommendation based on poor, inconsistent research in skin cancer screening and there is fair evidence that supports screening for skin cancer by clinicians to be moderately accurate in detecting melanoma.

Keep in mind, this recommendation does not apply to:

Adults with a personal or family history of skin cancer

Adults with high-risk of skin cancer

Self-skin exams

Exams done by dermatologists

The American Academy of Dermatology (AAD) responded to this statement:

“The American Academy of Dermatology is disappointed with this recommendation [via USPSTF], as dermatologists know that skin cancer screenings can save lives, yet we acknowledge the need for additional research on the benefits and harms of skin cancer screening in the primary care setting.” – (AAD, 2016)

Other Recommendations include:

American Academy of Dermatology

Recommends performing regular skin self-exams (once a month) to look for new or suspicious spots, and seeing a board-certified dermatologist to evaluate anything changing, itching or bleeding on the skin.

If you are at high-risk of skin cancer – seek dermatologist to see how often you should get skin cancer screenings (AAD, 2017).

American Cancer Society

Recommends skin cancer screening every 3 years for adults age 20-40, and annually for adults older than 40.

American College of Preventive Medicine

Recommends a full body clinical skin exam for patients at high risk for malignant melanoma.

American College of Obstetricians and Gynecologists

Recommends screenings for females aged 13+ with a history of habitual exposure to sunlight, a family or personal history of skin cancer such as basal cell carcinoma (BCC), squamous cell carcinoma (SCC), or malignant melanoma (MM) (Buttaro et al, 2017, p.245).

As you can see, nobody really agrees on the regularity in which people should get their skin checked and if they should get their skin checked at all. The underlying theme is if you are at high risk, start a conversation with your dermatologist (if you have never seen, one now is the time to get one)

All this talk about “high-risk” patients, who is at high risk?

– The sun causes 90% of skin cancers

People with fair or light colored skin

Skin that burns or freckles rather than tanning

Having naturally blonde, red, or light brown hair

Having blue or green eyes

Having more than 50 moles, large moles, or irregular (atypical/dysplastic) moles

Having a family history of skin cancer (blood relative)

Caucasian males over age 50

History of blistering sunburns, especially in childhood

History of indoor tanning use

Recipient of an organ transplant

Having a weakened immune system (due to immunosuppressive drugs or HIV)

Hx of other cancers such as breast or thyroid cancer

Taking medications that make you skin more sensitive to the sun

Certain autoimmune diseases – (Lupus)

Having xeroderma pigmentosum or Gorlin Syndrome

Exposure to carcinogens such as arsenic or coal

Having an area of skin that has been badly burned by the sun or other means.

Warning signs of skin cancer

Any mole or spot that changes in size or texture, develops irregular borders, or appears pearly, translucent, or multicolored.

ABCDE’s of Melanoma – arguably the most important info you can provide for a patient, caregiver, or friend (AAD, 2016; American Cancer Society [ACS], 2016).

There are a TON of amazing free resources on the AAD website that includes in-depth fact sheets, charts to monitor your own monthly self-skin exams, and other really informative sheets about all types of skin cancer. Overall, we are our own best advocates. If you notice something on your body changing, be an intelligent human and go get it checked out (like my Aunt Val!)

My mole was on my back. It became itchy and I’m sure it was evolving as I remember not knowing if it had existed before it started itching. Since the risk of having another melanoma is very high for me, I am checked every 3-4 months this year. Eventually I will probably move on to the skin exams every 6 months but the reality is that most patients discover their own skin cancers, which is why I still check my body monthly. It’s important not to check more than monthly, otherwise you won’t notice subtle changes.

Okay, I’ll get off my soap box now. I have a shitload more information about skin cancers and treatments and such but I will hold off for now. I’ll eventually move this info over to a permanent page on my site so it’s easier to reference.

Life Updates:

No news, is good news! Things have been pretty uneventful for the last month or so since my last post, which is the least amount of action or “adventure” I’ve had in my life since I was diagnosed. This is excellent because I was honestly pretty exhausted from all my own organs raging mini civil wars on my body. I have been deep in ultimate frisbee training and tryouts for Brute Squad, which are going pretty well. It’s amazing to me every year how many young up-and-coming ultimate athlete’s there are. Every year the sport gets more and more competitive and it’s so awesome to see it grow, but also, it makes tryouts pretty fucking exhausting. I’m one of the oldies now at the ripe old age of 30 but I’m hanging in there.

School is wrapping up this semester with this being the last week of class and I have two finals next week. I can’t tell you how much I am looking forward to having a real extended vacation without cancer treatment or NCLEX studying. I will finally get around to emailing so many people who have reached out to me these past 10 months as well as organizing my normal life a little bit more.

Some exciting things that have happened over the last few weeks include my first easter egg hunt with the Freedman’s (see instagram video), packing up my childhood bedroom since my parents are moving out of Westborough mid May, more wedding planning, and completing my first ever Boston midnight marathon bike ride! The ride was super fun and something I have been wanting to do since I first heard about it.

The Boston Marathon has always been my most favorite Monday and running it has been an item on my bucket list since I first watched runners truck up heartbreak hill several years ago. I get strangely emotional about marathons (maybe I’m not alone?) I think it is such an amazing human feat and it brings me to tears thinking about it. I’ve cried every marathon Monday I’ve attended or watched (and even during a few documentaries that weren’t even about Boston). I have decided that next year (2018) I am going to apply to run and raise money for the Melanoma Foundation of New England. Obviously applications haven’t opened yet, but it’s something I feel really passionate about doing and hope they let me in.

I won’t have scans or skin checks until June, so everything should hopefully stay quiet until then. Minor micro-burst headaches still but they are less and less frequent. Looking forward to celebrating my cancerversary June 28th!

The starting line crew!

30 miles later

it’s now 2am

Photo I found of me going to my mom’s MSW graduation

Easter strawberry short cake

my easter basket thanks to the Freedmans!

RyFight

I am not the only ultimate frisbee player battling cancer. There is a guy from New York named Ryan, who I don’t think I know personally, but it’s possible we’ve crossed paths without knowing it (in the tiny ultimate world). Ryan was diagnosed with colorectal cancer in Sept. 2015 that ended up being stage 4. In short, things have not been going as well for him as they have for me. His blog is amazing, and it’s easy to tell very quickly that Ryan is an extremely genuine guy with a huge heart. Laura Bitterman and my Brute Squad teammates set up a fundraiser (schwaming cancer tanks) for me last summer when I was first diagnosed and it was unclear if my health insurance was going to cover anything. I have been extremely fortunate for new immunotherapies combined with masshealth and the Affordable Care Act, that have left me with a surplus of donation money that I haven’t touched and haven’t really known what to do with. It’s always possible my cancer can recur but right now I am doing alright and when I read about Ryan’s unfortunate updates, I knew I wanted to help out. Please check out his page and consider donating as well .

I’ll update again sometime in May. For now, stay sexy and fuck cancer!